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HOCKEY!!

4 Apr

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Next Wednesday, April 10 marks what would have been Sammy’s 16th birthday.  Yesterday, we had a unique opportunity to memorialize Sammy, so we took advantage of it.  We painted his name on the ice at Indiana Farmers Coliseum located at the Indiana State Fairgrounds, and it will be there tomorrow as the Indy Fuel plays the final home game of the regular season.

When the Indy Fuel hockey organization was formed five years ago, Steve and I were there for the first puck drop.  It was also my very first hockey game.  I grew up in Indiana where basketball reigns supreme and where professional football has only existed since 1984.  Aside from putting the puck in the net which is tended to by a goalie and the tendency for fights to break out, I knew nothing about hockey.  After that first game, I was a hockey fan!

We have attended several games during each of the five seasons, but we made the decision to become full-season ticket holders (36 home games) for the 2018-2019 season.  Steve and I have enjoyed the season so much.

When I imagine what our current life might look like had Sammy not been born with HPE, we would be teaching him to drive a car in preparation for his drivers license.  We would have been dropping him off at school dances, taking him to baseball practice and scheduling orthodontic appointments.  He likely would have been looking for a summer job, and hopefully would have been described as responsible, respectful, and fun-loving.

IMG_4896 (2)But we aren’t doing those things because he isn’t here, and he never had a brother or sister to help fill the empty space left behind.  Instead, we go to hockey games, and Sammy goes with us in our hearts.

On game nights as I walk down the main concourse outside the Coliseum, I remember pushing Sammy’s wheelchair in that very spot and stopping to tie a green helium balloon to his wrist during the Indiana State Fair.  As we park by the Arts building, I remember taking Sammy into that building because it was air conditioned and how we placed wet paper towels on his arms and legs to try to cool him down.  As we pass by the Cattle Barn, I remember how engaged Sammy was when watching the dairy cows.

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As I sit in my seat at each and every game, I look across the ice and remember where we sat together for the circus.  Because of Sammy’s wheelchair, we were able to sit in the handicapped section right down on the floor where the ice is now.  You can’t even begin to imagine the fear I had as I watched the lions and tigers being led in and out of an opening that seemed way too close for this momma’s comfort.  And, I remember watching his fascinated reaction to the performers in the motorcycle cage (aka “globe of death”).  It freaked me out, but it was his favorite part.

In the past 16 years since Sammy came into our life, I would have never predicted that hockey would help sustain us in the grieving process, but no matter the cost of parking and tickets, this hockey season has been priceless.

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Reality of HoPE

22 Nov

I know that it can be uncomfortable to be my friend especially when I share updates on children who are sick or dying. My deepest desire is that no parent would face a life-threatening diagnosis for his/her child and none of my friends would experience the pain and heartbreak of saying goodbye to one’s child.

Can I tell you a little bit about Holoprosencephaly (HPE)? It is the most common brain malformation in a developing fetus. It occurs during days 17-21 of fetal development, and as a result, it often ends in early miscarriage. It is estimated that HPE occurs 1 in every 250 pregnancies, so if you experienced a miscarriage without an explanation of why, HPE could be the reason.

Did you know that the likelihood of a fetus with HPE surviving to birth is only 3%? Let me say that again…3%! Can you imagine the determination and will it must take to overcome those odds?

When one of our children with HPE passes away, it rocks our HPE community. We grieve for the parents, siblings and families, but I know we also celebrate the power and strength these children have had in the moments, hours, days and years that have made up the lifetimes they have known.

I will never be as strong and courageous as these little ones have been in their lives, but their examples push me to step outside of my comfort zone, to give of myself to others in sharing my journey from HPE to HoPE.

If you would like to know more about HPE or would like to help our cause, please visit http://www.FamiliesforHoPE.org. To learn more about my personal journey, visit http://www.SammyYammy.com.

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Dandelions from Heaven

11 May

Dandelions from Heaven (Author Unknown)

Mothers Day is coming…and I wanted to send you a sign…
Something you can tell others…”Is from an angel of mine”.
So I searched the Heavens high and low for that perfect thing…
And low and behold I found it….and a smile I hope it will bring.

So when you look to the Heavens and see the yellow stars in the sky.
Just think of me…your angel…in the Heavens way up high…
And just imagine those stars…are dandelions up above…
Yes! Dandelions are also in Heaven, which you know how much I love.

So on this Mothers Day…when you awake and feel blue…
You will notice those yellow stars…are no longer in view…
So just look to the meadows and the dandelions you see…
Are the ones I’ve tossed down this Mothers Day from me!

And when you find a dandelion that has turned from yellow to white…
You’re supposed to make a wish…and then blow with all your might.
For you will be blowing kisses…to me in Heaven above….
And I will be catching them and blowing them back…sent with all my love.

Please know that I am with you…on this Mothers Day…
And also in the days ahead…God and I will never stray…
We will be with you in the morning…when you wake and see the sun…
We will be with you when you say your prayers…when the day is done.

For God and I will never be…very far from your side…
For I can now be everywhere…and God will be your guide…
So…remember when you see dandelions…it’s your guarantee…
That I am always close to you…For dandelions are free to roam…now just like me.